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Saturday, December 29, 2012

Medication Fail

At AJ's last appointment, we were given a prescription for Intuniv. We were supposed to add it to the Adderall, so that it's a little extra boost. He was to take the Adderall and the Intuniv in the AM, then another Adderall in the afternoon. When I sent my husband to Walgreens to pick it up, the pharmacist informed him that the prescription required prior authorization. I called and went in repeatedly to check on the status. Recently, the pharmacist called to let me know that they will, once again, fax AJ's doctors office and let them know that they need to get approval for it. What happened next really had my head spinning.

Yesterday, a nurse from the doctors office called me to let me know that the insurance denied the request. I asked her what their reasoning was, and she stated that it was because AJ has to "fail" 2 medications from a certain set (stimulants) before they would approve Intuniv. These medications include: Strattera, Concerta, Adderall, Ritalin, and others. When AJ was first diagnosed, he was given Ritalin (methylphenidate). When that didn't do anything, he was switched to Focalin. After a while of being on that, and no improvements, he was taken off. We then went to Adderall, twice a day. There was no improvement on that either. We tried out Adderall XR, but it only helped for the first 2 hours or so. His metabolism is so high, that he burns right through it. We went back to regular Adderall, again twice a day, but added Clonidine at night. No change in behavior. The Clonidine helped him to sleep, though. So he was more rested and ready to take on the day when he awoke. However, it also gave him the much needed sleep he needed so that he could have his full blown attacks the next day.

The nurse told me that she would talk to Dr. N and see what he wanted to do. She and I discussed that AJ has, in fact, failed 2 medications. He actually failed 3, because Focalin is on the list of medications that need to be failed. She said that she would have him resubmit the form with the added information that he is only getting worse, and that the Intuniv is going to be added to the Adderall. She also gave me the number to the Mental Health Clinic because AJ had destroyed the paper with the number written on it in a fit of rage. Everyone at that office knows how my son is, and they all know that he needs this help. They are rallying behind me and trying to help as best as they can. I hung up with her feeling defeated. I felt like this was a battle we weren't going to win. I am not even 100% sure that the Intuniv would help, but I am desperate to try whatever is being suggested to us. I cringe when AJ gets into one of his fits. I mean, he's only 5! He'll be 6 in less than 3 weeks. With age comes strength. The older he gets, the bigger he gets, and the stronger his fits are. What happens when he's 10 and his fits are way worse? How will I protect myself and my girls from him? This needs to stop, and I need all the help I can get. If it's in medication, so be it. I'd be a fool to deny it.

Today, I got a phone call from the doctors office. I quickly hushed my kids, and prepared myself to be told that there is nothing more we can do about the Intuniv. I have heard about other medications. Maybe they would work instead. Other moms in the group I'm in have had success with Vyvanse. My Brother in law was on Concerta with success. He was also put on Strattera, with no response. I prepared my self to ask about those first 2. When I answered, it was just a receptionist calling to confirm Gianna's appointment for Monday (more shots for the poor baby ). I hung up, again feeling defeated. No call regarding AJ meant that the insurance denied it, again, and Dr N was debating on what to try. A few minutes later, the doctors office called again. I hushed the kids again, and prepared for the worst. The nurse, in an excited voice said "Kristen! Guess what?! The insurance approved it!!". I felt my knees give out from under me. I was ecstatic. Thrilled. Surprised. Scared. What if it doesn't work? What if we went through all of this hassle for nothing? No time to be worried. I need to celebrate this small accomplishment. We are going to be trying him on a new medication, and I fought for my son to have the medication that many have had success with.

His outbursts are getting more and more frequent, and more and more violent. He's stomping, screaming, threatening to throw things at people, threatening to hit people. He's lying. He's blaming others. Just today, he pee'd his pants ... again. He's been doing this often. When I tell him I'm going to put diapers on him, he gets excited. That's what he wants. He is just not acting like himself. I am going to call the Mental Health Clinic again on Monday, when he's back in school, and let them know about these outbursts. I am at my wits end. I don't know what to do. When I say I need help with him, I fully mean it. I don't just need someone to say "Oh, I feel bad for you." or "Oh, it'll get better." No, what I need is someone to come over and actually help me with him. Maybe take him for a bit. Come over and keep me company so that I have someone I can complain to in person. Everyone seems to think that AJ is this sweet, innocent, super polite child. When I tell them that he isn't, they seem genuinely surprised. "You must be joking. He's a wonderful kid!". Maybe at school. Maybe at others' houses. I get jealous when I hear that. He's very loving ... when he wants to be. He will come up and give me hugs for no reason, just because he wants to. But I know that it means that an outburst is bound to happen soon. The pattern is: Get yelled at, be distracted by something else, get nervous over something, come and hug me and tell me he loves me, go play, then flip out. It's like he needs that hug and reassurance that I love him to be able to have these outbursts. I often wonder, if I don't respond and ignore his hugs and I love you's, would he NOT flip out? Would he think that I wouldn't love him if he acted out? I don't want to take that chance by ignoring him, because the truth is, I *DO* love him. I may have to remind my self of that often, but I do. He is my son. What I do not love is his behavior. That is what I want to change. I want the medication to bring my sweet boy back to me. I miss my son.

About Me

I'm Kristen! 29 years old, with 3 kids, married for 5 years. 2 of my kids have special needs. AJ (7) has ADHD, ODD, SPD, and PDD-NOS. He is the one that this blog is named after. Gianna (3) has Hereditary Spherocytosis, a blood disorder that affects the immune system. Sofia (11) is your typical tween- snotty, and thinks she's always right.

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